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Old 01-26-2013, 11:55 AM   #16
Debbie L.
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Join Date: Jul 2006
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Re: Libido is lousy and ...

[FONT=Garamond][SIZE=4]It's good to raise this issue often, so those who are just beginning the frustrating experience will have some information.

First off, I will say, from my voice of experience, that it's not good to just keep trying to make this work, when there is pain. The tissues involved are not only dry, they are unusually thin and much less elastic than normal and they will heal poorly. If it's uncomfortable, stop and try something anatomically different, in the short-term.

For the longterm, there are some options but most of the ones that actually work involve hormones. I am pretty sure I tried all the (non-hormonal) lubricants known to man, and they just aren't enough (probably because, as I said above, the tissue has changed -- it's not just lack of lubrication).

Some oncologists are okay with small amounts of local estrogen or testosterone. There have been quite a few studies measuring how much estrogen is taken up systemically when it's applied vaginally, and it seems the Estring has the lowest systemic affect. But for all the kinds of vaginal estrogen they can measure small amounts of systemic increase, especially when it's first started (the theory there being that the dry tissue is so starved for estrogen that it tends to suck it up more efficiently). This (systemic distribution) does make sense, if you think of the estrogen skin patches (achieving a systemic level high enough to alleviate all menopausal symptoms), and realize that the mucous membrane of a vagina is way more efficient at absorption than the skin.

There have been studies with testosterone also, partly in hopes that it would improve the vaginal tissues while also improving libido. It is converted by the body (via aromatase) into estrogen so theoretically would have the same issues. Although it has been argued that if one is on an AI, that would prevent the conversion. There is also some theoretical concern that some breast cancer cells have androgen receptors which could be directly affected.

So, although they've done all these measurements, there have not to my knowledge been any longterm studies looking at actual results of this, as far as do these women (using hormonal help in order to maintain a sex life) perhaps have more recurrences. I think there was one small study in the past few years (showing no difference in recurrence) but it was small, quite short, just a few years if memory serves.

So some oncologists err on the side of caution and discourage any use of vaginal estrogen. Others err on the side of quality-of-life, in the face of not enough evidence to base the decision on, and allow use of the Estring or teeny bits of vaginal estrogen cream (NOT the full applicator nor the usually-prescribed frequency). All a woman can do is make the decision that feels right for her, and that will be different for each person.It is frustrating that there is just not enough information to give us a clear answer.

There is also the question of whether it matters if the cancer had/has hormone receptors.

I used both the Estring and cautious dabs of Estrace, a vaginal cream. But as I said above, I think too much damage had already been done, and although it was a little better with some estrogen on board, it remained a pain (literally, and in terms of the patience required to complete the act). It's been a moot point for me for years now, alas (due to my husband's health issues). But I remember how important and frustrating it was, and I send my sympathy to all who are struggling with this issue now.

Debbie Laxague
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3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.

Last edited by Debbie L.; 01-26-2013 at 12:00 PM.. Reason: weird appearance of font size not visible when typing
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